A Cancer Story 3.0 - the saga continues

The past week has been a bit of a blur for us.  We sent this message out to our family and friends last night.

Hello everyone,

It’s taken us a full week and a bit to get our heads and hearts around some news we received last Monday, concerning Mark’s health.  Apologies for not getting this out to you all earlier, we just needed a few days to process everything.

On June 15, Mark had his six-month check up at the Cancer Clinic.  His last appointment, in December, was okay.  At that time, his liver looked good.  The chemo had done it's job.  They are also keeping a close eye on his lungs.  We were told that he had a few spots on his lungs but considering his age and the fact that he’d smoked for a long time when he was younger, spots on a lung are not too concerning.

Last week, we were hoping for status quo.  To be honest, I was a little nervous about his lungs.  Neither of us had any reason to expect that there would be any problems with his liver.  He’d had the surgery, he’d done the chemo.  All should be good right?  Wrong.  We were told that he had a grape sized tumour in his liver.  Surgery was not going to be an option this time.   Our next step is chemo, again.  This time, he’ll do a similar type of chemo (presented in a similar fashion, 2 hours in the clinic, then carrying the chemo bag for 48 hours – once every 2 weeks).  Big difference this time is that he’ll be doing it for the rest of his life.

It felt like the words “the rest of his life” were hanging in the air, like inside a bubble, in a comic book.  Mark and I looked at each other, wide eyed and frankly pretty upset and Mark asked how long that would be.  The doctor said that Mark could probably have 3 good years but 5 years good years was probably not to be expected.  Gut punch.  I just wanted to crawl under my chair and cry.  I could tell Mark wanted to do the same thing.  We had not anticipated this kind of news, never ever.  In between, we heard that he still had healthy liver tissue (good news) and his overall health is very good (they seemed surprised that he was feeling so well).  We walked out of the clinic in a fog, completely in shock.  I don’t remember much about the ride home but we were pretty upset.

Once we got home, we made a few phone calls to folks who needed to know right away.  I’m not sure that anyone even understood much of what I was saying, I was that upset on the phone.  Of course, we didn’t really sleep that night.  The next day, Tuesday, we went to see our family doctor and share the news with her (she’d not yet received a report from the Cancer Clinic).  She seemed as shocked as we felt.  Fortunately, on Tuesday night, we both slept a bit better and awoke with a plan in mind.  It’s a good plan, we’re still working out the details of it but for now, we think it’s a good plan.

Plan A

Regarding Mark’s health and the immediate future, he’s “taking the summer” as his oncologist suggested to enjoy himself.  He’ll have another scan in July and we’ll be able to see how quickly the tumour is growing.  Chemo will start in the fall.  The health part of the plan is two-fold:  let the chemo control the tumour and we’ll control the rest of the liver.  We’re going to do our very best to feed his liver the best kinds of foods and supplements that it needs to stay strong.  We’ve decided, and I don’t think this sounds naïve, to treat this as a chronic liver disease.   3 years, 5 years, 7 years, 10… no one ever knows for sure how long someone is going to live, whether or not they have cancer.  Cancer survival rates are a numbers game and someone has to beat them, sometimes.  Our job right now is to keep his liver as strong and healthy as we can, for as long as we can.

The other part of the plan involves simplifying our lives.  Over the next few months, we’ll be purging stuff at home and getting ready to put our house up for sale.  It’s just a little too big, a bit too much maintenance and too far from the hospital for us.  As much as we have enjoyed it, we feel that it’s time to get back into town, possibly into an apartment, something that is low-maintenance.  Like I said, simple.  We want to spend our time with friends and family and each other, not worrying about projects around the house (not to mention keeping 0.5 acres of lawn mowed).

For those of you who might be wondering what you can do to help, we have some ideas and will keep you posted.  It’s not easy to ask for help and so far we haven’t had to.  So many of you have offered help through Mark’s previous surgeries and chemo and for the most part, we wanted to do it on our own.  I think we’re going to need lots of help to get us through the next few months and we won’t be afraid to take you up on any offers.

In the meantime, know that Mark feels great, he looks healthy and, except for a grape-sized tumour in his liver, is doing just fine.  We’ll continue to keep you posted as we carry on with our plans.

Thanks so much for your continued support, we love you!

Mark and Peggy xo

Chemo - Round 12 - NOT!

Saturday evening, while we stood in line outside the Elgin theatre, waiting to go in, a bird shit on Mark's head.  At the time, I said to him, "that's supposed to be good luck" as I laughed and handed him a tissue.  Depending upon how you look at it, Mark's had a lucky couple of days so far this week.

The PICC line issue I told you about the other day ended up being a bigger deal that we originally thought it would be.  On Monday, Mark went to the cancer clinic for his regular, pre-chemo bloodwork.  He'd been advised to go earlier than normal (he typically goes on Tuesday) so the nurses could take a look at the PICC line and try to get it going.

No matter what they did to the line, they could not unblock it.  This happens sometimes.  The nurses paged his oncologist while Mark waited.  When the doctor arrived, he told Mark that he could do one of two things:  they could remove the PICC line, put a new one in, and proceed to his final round of chemo (scheduled for today) or he could have the PICC line removed and be done with it.  Mark didn't hesitate to get that line out and leave, as soon as he could (thank you poopy bird).

Obviously, if this had happened at week 16, there would have been no question, he would have had a new line put in and carried on.  At week 23 however, it's a completely different story and he is happy to be finished with chemo.  We're waiting for an appointment for a follow up CT scan, he has an appointment already scheduled with the oncologist for early December and hopefully, that will be it for a while.  Of course, we expect that he'll continue to be monitored by his surgeons, and the cancer clinic but we're both very relieved and happy to have this chapter over.

His arm is pretty sore where the PICC line is and he is well bandaged (and has to wear the bandage for at least another day).  For the past 24 weeks, he has had to have his arm wrapped up in cling film and rubber bands, to take a shower.  The first wrap-free shower he gets to have will feel amazing I'm sure.  Having the chemo meds out of his system will feel even better but we're a few weeks away from that.

The end of chemo has been a little unceremonious but Mark was never going to ring the bell anyway!

not good

Ugh.

So, we stopped off at St. Elizabeth on our way home from work, like we do every Friday.  Mark needs to have his PICC line cleaned every week.  Normally it's a pretty quick process, we pop in and we're gone in 20 minutes or less.

Today, for the first time in 23 weeks, there was a problem.  The line is blocked.  They tried to unblock it and couldn't.  When he goes for his pre-chemo blood work on Tuesday, the folks at the cancer clinic may be able to do some voodoo on it and get it working again. Could make chemo next week difficult.  Not sure what they will do if it can't get going again but we're trying to not worry about it.

Tomorrow, we head to Toronto for the day and we're going to do our best to not think about PICC lines and chemo and cancer.  We have tickets for the world premiere of "Roger Waters The Wall" at the Toronto International Film Festival.  The men themselves, Roger Waters and Sean Evans are scheduled to appear and participate in a Q&A after the screening.  We're both pretty stoked to have tickets and I think it's just the thing we need to keep our minds off of medical nonsense for a few hours.  

fueled up

My long weekend started last night.

Four days off feels pretty good.  I must say, it also feels a little decadent, having just returned to work last week after 2 weeks of vacation but I don't care, I'll enjoy it all the same.

Mark's still wearing his pump today.  He's feeling much better this round than the last two.  When he met with the oncologist he found out that his dose had been lowered a bit, which is probably why he hasn't been as sick.  Whatever the case, we're glad that he's not running back and forth to the bathroom or sleeping 'round the clock.  That was no fun.

We don't have any big plans for the weekend yet.  There are things we hope to accomplish in the yard and around the house but it'll be nice to not rush with them for a change.  I do like the slow pace of a long weekend and wonder if that's what retirement feels like.  I still have a way to go (like 20 years) before I can retire but still, I wonder sometimes.

In the meantime, have coffee will putter!

Chemo - Round 11

You may think that chemo would be more fun when you have a beautiful view of the lake wouldn't you? You would be wrong for thinking that. It's never fun, ever. The folks at the clinic are lovely and helpful and we're so grateful to have access to great care but honestly, we are both anxious to see this come to an end.  Today was round 11.  Just one more to go.  In two weeks and 46 hours, it'll be done.

We will not miss the clinic, or the view of the wind farm, or the sweet and awesome nurses, the friendly admin staff or the other patients and their families.  The sounds and smells of the cancer clinic, the pink parking passes, the long list of medications and doctor's appointments, I will gladly shove away into my memory somewhere.

In two weeks, and 46 hours, we will, with any luck, be able to put this all behind us.  Fingers, eyes, legs, everything is crossed.  

Chemo - Round 10

"Having dental surgery without any freezing..."

"Slamming his hand repeatedly in the car door..."

"Being trapped in closet with Glenn Beck..."

"Um...Things Mark would have rather done than have chemo yesterday??"

 Yeah, yesterday was not fun.  Mark did not want to be at chemo.  I cannot blame him at all.  First of all, he has been so sick since leaving the clinic two weeks ago, he couldn't stand the idea of doing it again this week.  Secondly, this is a rough week for him, August 15 is the anniversary of his mum's death and the few days leading up to it are always really difficult for him.

Ordinarily, he and I both work in the morning before chemo but yesterday was weird.  We were home, farting around.  We got to chemo earlier than normal so we had more time to see the folks in the waiting room.  A little girl, maybe 5 or 6, was there running around with her brother while she received her chemo.  It was heartbreaking to see but at the same time, I thought, at least whatever she's got, they are treating her.  She could be a big success story but boy, it's difficult to see a child in the cancer clinic.

Eventually we got in there, Mark got hooked up and that pump couldn't click fast enough. He's feeling a lot better this go round.  He felt pretty good last night, slept well, and this morning, he's up at a decent time.  We've had coffee on the porch and so far, the day is going okay.  I'm happy to say that this week, the anticipation has been far worse than the actual event.  Just 2 more rounds to go.  We'll both be really relieved for this to be over.

kicking ass

Chemo continues to kick the ass of Mark.  I have never seen anything like it.  Sleep, sleep and more sleep.  We're both off anything resembling a schedule and the TV watching continues.  We recently finished up with The Wire and are getting ready to start into Oz.  Six seasons of guys beating the crap out of each other in prison.  I have a feeling it's not going to be anything like my beloved Bad Girls.

As vacations go, this one has been very restful but it would have been nice to have Mark feeling better.

In other news, the dogs are each celebrating their birthdays this week so we'll have some sort of doggie celebration them for them before the week is over.  I'm sure they don't care that it's their birthday just so long as they get something good to eat (they are funny that way)!

Happy Birthday Mum

Today is my mum's birthday.  Happy Birthday Mum!!

We stopped by for a visit and to give her a little gift earlier in the day.  She's having a relaxing day I think.  My brother was scheduled to arrive shortly after we left.  I felt a little bad that we couldn't stay until he got there.  We had the dogs with us and they were getting antsy to go (it was getting pretty hot by the time we left) and Mark wasn't feeling super fantastic either.

He ended up having to stay home from work on Thursday and Friday.  I'm not sure if this is all down to the chemo or if he's picked up a bug too but he's been sleeping, a lot.  Like more than I have ever seen, even after surgery.  The upside of the sleeping is that when he is asleep, he isn't having stomach distress so at least that's something.

When he's not sleeping, we're just hanging around the house with the dogs, binge-watching tv shows we've had saved up for a while.  Over the past couple of days we got through the final episodes of "Halt and Catch Fire" and "Fargo."  Fargo was incredible, Halt and Catch Fire... well it left me a bit "meh."  I worked for a software company right out of college so a lot of what was portrayed took me back to those crazy mid-80's days.  The company I worked for sold flow charting software and I remember how HUGE a deal it was for us to offer mouse support for our product.  By the time I joined the company, we had 5 1/4" and 3 1/2" inch floppies but just prior to me joining, they were selling 7" floppies too.  I think if it gets a second season, we'll probably watch it for the amusement factor but I really didn't give a crap about any of the characters by the time season 1 wrapped up.

Now that we are both officially on vacation, I'm not sure what we will get upto.  It's going to depend entirely upon how Mark's feeling.  He has chemo again next week which should be interesting. Hopefully he'll be rested up and ready to go again by Wednesday.

15 years

Poor Mark.  He's been absolutely miserable for days.

Yesterday, he went into work and actually got through the whole day but I really wished he hadn't.  Last night was very rough.  I didn't let him go into work.  He'd not slept at all and quite frankly, it would not have been safe for him to be behind the wheel in the state he was in.

Happy Anniversary huh?? Yes, today is our anniversary.  We met on this day in 1999, 10 years later, we did it up all legal and got married in our back yard, Sammy and Gracie (and some friends and family) witnessed it for us so it's all official.  Neither of us could have ever anticipated that we'd been dealing with the fallout from round 8 of chemo on our 15th anniversary but here we are.  This is the latest in a long line of challenges we have had to face since we got together.

By mid-day, Mark had perked up a bit and he really wanted us to go do something.  We went out for a late lunch/early dinner at a sushi place we like.  It was a really lovely meal and all of that rice and veggies seemed to settle his stomach. 

Next year we will do something a little more exciting than a sushi lunch.  This year has been all about getting through this treatment and putting cancer behind us, once and for all.  Not wishing my life away but it'll be nice to get to the end of the summer and finish this up!

all I ever wanted?

Okay, so I'm on vacation.  Officially.

I'm scheduled to be away from work for two weeks.  Mark will be off with me for the second week.  We started off the holiday weekend with a visit to St. Elizabeth Health Care on the way home.  Mark had his pump taken off and his PICC line sorted out.

If he's going to feel lousy from the chemo, it's normally the worst on Saturday morning after having the pump removed.  By Saturday, normally, the full dose is settling in and the side-effects begin.  The bad stuff seems to be starting early this week.  He's feeling like hammered poo at the moment. It's quiet in the house right now and he's snoozing with Gracie in our room. 

My hope is that a good sleep tonight will help him feel better tomorrow.  It's really difficult to see him like this.  I'm glad he's got the extra day off to rest.  

In other news, the bunny we have been watching through the front window all summer was outside when we pulled into the driveway today.  He's pretty cute (I say "he" but really, it could be a she I suppose) and actually didn't run away when I pulled out my phone to snap a photo.  Hopefully, that's a good sign huh??

Chemo - round 9

So round 9 of chemo is happening now.  As you know if you've been reading here for a while, Mark gets a big dose at the cancer clinic and then wears a pump for 46 hours to get the second half of it. This is repeated very 2 weeks.

It feels like it's going to be a very very long 46 hours.  Poor Mark felt really sick all through chemo today.  We're not sure if the last dose was just too much (he felt pretty good up until the last day or so) but he started to feel woozy and yucky while he was in the chair this afternoon.  This doesn't normally happen and I hope it's not a sign of bad things to come.

If I have any say in it, he's going to be having a very quiet long weekend.  I think that everything is just starting to catch up with him.  I mean, he's had major surgery and chemo to deal with over the past seven months and honestly, we're still trying to get our heads around the death of our friend Tom.  His funeral is happening tomorrow and we can't be there because of chemo.

It's all just been a bit too much I think.

Chemo - round 8

Round 8 of chemo is now behind us. 


So far, at least when I last talked to Mark this morning, so good.  We have discovered that each round is different.  Through trial and error, we're trying to figure out how to manage things for him.  Mark reacts to the dosage differently and the actual time spent in the chair at the clinic is never the same.  Yesterday, for example, was very noisy and vibratey.

He was having a tough time getting comfortable in the chair when I arrived and while there were not many folks in the clinic for treatment, the volume level was at 11.  There is a big construction job happening on the corner of George and King Streets (the corner the Cancer Clinic sits on).  Work is being done on the water mains so there is a giant jack-hammer  hammering at the limestone beneath the pavement (we had the same thing happen one summer on the street in front of our previous home - the cost of living in the "Limestone City").   Every now and then, the jack-hammer would start up again and the whole building would vibrate.  There was a lot of noise but mostly, what we noticed was how much we were feeling the vibrations, in our feet, in our stomachs, in our heads.

At the same time, the gentleman in the chair next to Mark, was sparked out, snoring loudly.  It was actually kind of cute that in the middle of all of this noise, shaking and chaos, he was zonked out.  I was a little bit jealous of his fabulous napping skills.

As far as his side effects from the actual chemo goes, things seem to be better this round.  Mark started taking some of  his management meds preemptively, yesterday morning.  That seemed to help a lot with the nausea and diarrhea.  Of course, his energy level is still lower than he'd like it to be but he's actually at work today.  This is the first time in four sessions that he's been able to do that.  We had resigned ourselves to the fact that he was going to need to schedule chemo Thursdays off for the remaining weeks of his treatment.  Looks like that won't have to be the case.

the day after

Well, where did that 24 hours go??

Finally, at the moment, I think that the patient is starting to feel better.  Had a rough night last night.  Lots of stomach issues, not a lot of sleep.

This morning, Mark was scheduled to go back to work but I wouldn't let him.  We both just had a quiet day.  Got caught up on our sleep.  Napping in front of the air conditioner actually felt pretty good.

I've been on vacation all weekend but am not accomplishing much.  The "to do" list I had for myself will just have to wait.  None of it was urgent, just things which I would have liked to get to.

Chemo - round 7

Chemo during your vacation is not really any more fun for the patient than it is when you receive it on a regular day.  I would actually venture to say that this week's chemo was a little harsher on Mark than it normally is.  The odd thing about that (and we're not 100% sure at the moment) his oncologist was going to decrease the dosage slightly this week.  About halfway through today's session, Mark started to feel weak.  That hasn't happened before.  Perhaps the weather is having something to do with that.  It was pretty steamy and humid today outside today (it was comfortably cool in the clinic) which may have zonked him a bit.  Not sure. 

Since we got home, he's continued to feel weak.  He did eat a bit of dinner and had a little nap earlier.

Fortunately, he received a prescription for a new anti-nausea medication that his pharmacist suggested.  If he takes it in advance of his next round, he should notice a difference.  Sure hope he does anyway.  Each round just gets a little rougher on him.

Thank goodness he's only got 5 more of these to go through.

better and better

Finally, I think Mark's starting to feel a bit better. He went back to work yesterday and the new meds he got from the cancer clinic seem to be helping. His stomach is starting to settle down a bit. 

They gave him a super mega high dose of loperamide which is helping.  Funny thing was, they also sent him a prescription for the one anti-nausea drug he cannot take (because it makes him have more nausea - go figure) but the loperamid is helping and he's no longer afraid to eat which is huge. 

For the past couple of nights, he's been able to sleep and he even got part of the lawn mowed on Monday afternoon (although I think he did too much) which made him feel better mentally.  The whole thing is just exhausting, physically and emotionally.  My hope is that he won't have another "lost weekend" like we just had, again.  It's really hard to watch him going through it, especially when there isn't anything at all that I can do to help.  For all of the information we received about chemo, they really did not prepare us for this.

long weekend

Poor Mark is still feeling like a bowl of soggy noodles.  Actually, he'd probably say "hammered shit" but either way you describe it, it's not good.

We both went back to work on Friday but I think he should have probably stayed home.  He's been sick all weekend.  The physical part of the sickness is making him crazy.  He is beating himself up because he wants to be outside mowing the lawn.  He's too weak to even think about it and I have had to keep sending him back to bed every time he starts talking about it.  He's a strong guy, a lot stronger than I would probably be if I were in the same situation. Surgical recovery was easier on him than this has been and it's getting to him.

Fortunately, he's sleeping a lot.  I know he's very weak and tomorrow morning, we need to call the cancer clinic and get something for his symptoms.  We've been told that there is no good reason for nausea and diarrhea during chemo, that they have stuff to control it.  Mark has agreed that no matter how he feels in the morning, he'll stay home from work tomorrow.  I want him to get really rested up before he heads back to work.  Hopefully he'll be able to try some new meds too.  We have got to get in front of this.  I'm afraid that if he stays this sick, he'll end up in the hospital, dehydrated, electrolytes all out of whack.

The treatment is obviously not as horrible as the disease but boy, we're really starting to understand why some folks just say no to chemo.

Chemo - round 6

So we have just passed the half-way point for Mark's chemo.

He has completed 6 rounds and has 6 to go.  Apparently, according to the doctor, the first 5 were "easy" and things are going to get tough from here on out.

If last night was anything to go by, I guess he's not wrong, although I'd hoped he was.  This round seems a lot different from the first 5 and Mark's feeling rough.  Really rough.  We've both been up most of the night and are both staying home from work today.  Hopefully we'll be able to get some sleep. 

Not sure what it is about night time but somehow, daylight seems to make things better.  The sun will be up soon and I'll try to get some tea and toast into him.  If his stomach settles, we'll both be able to sleep, I hope. 

Times like this are difficult and you find yourself questioning decisions you made.  We know that he has to stick with chemo and see it through to the end but honestly, this is pretty bad. 

buzzed

This weekend, we shaved what was left of Mark's long hair off.

Before I met him, he used to shave his head every few years but since we'd been together he'd been growing it out.  It got quite long and we only very occasionally trimmed the ends.

Chemo seems to be catching up with him a bit and we've noticed that his hair was starting to fall out, little by little, over the past couple of weeks.  On Saturday morning, I was sitting outside with the dogs and Mark walked into the porch with the clippers in his hand.  We grabbed a lawn chair and went outside to do the job. 

It took a bit longer to get it finished than I thought.  By the end, Mark had a lot of hair in his hands.  We put most of it in the compost bin but some of it did get blown away and I'm sure will end up in neighbourhood bird nests. 

The breeze was pretty cool on Saturday and he did feel a bit chilled at times.  All weekend, he kept reaching up for his hair but it wasn't there.  To be honest, I think that he looks a lot healthier and younger with the hair gone.  It was getting pretty straggly and he looked unwell and dragged down by it.  He's thinking about leaving it this way, even after chemo is done. It was weird though, this morning when we were getting ready for work, for me to not braid his hair.  It's something we've done every morning for almost 15 years and it felt odd to not do that today.

Chemo - Round 5

It almost feels like we're starting to get the hang of this chemo stuff, at least the clinic part anyway.  When I arrive to meet Mark, I no longer need to give my name, the ladies in the reception area know me. 

This week's visit to the Cancer Clinic was quiet.  It was nice actually after the last couple of visits.  Even though it was only the 5th time we've been there (and I think there are folks there who have visited the place a lot more than we have), you quickly get into a routine with it.

During today's visit, there was a newbie receiving her orientation information (while she received her first treatment).  It was interesting to hear the conversation and we chuckled quietly to ourselves at parts of it.  We have both learned a lot, through trial and error, about how to deal with certain aspects of chemo and much of the advice we received during Mark's first treatment was not super helpful.  The orientation does give you a basic starting point though.  The rest of it, you just figure out as you go along.

In other, non-chemo news, today is the 48th Anniversary of the day my parents were married.  Happy Anniversary Mum & Dad!!

Chemo - Round 4

Today was round 4 of Mark's chemo.

I'd be lying if I said that it wasn't starting to get to him.  We try to focus on the fact that he's 2 months in now, with only 4 to go.  33% of the way through.

He's been having a lot of nausea since the last session and his energy level is taking a beating.  They keep telling us that the medication he's receiving accumulates in his system and that this is part of the normal process.  I think it's discouraging for him because he's thinking, if I feel this lousy after only 2 months, how will I feel at 4 months... and at 6.  Fear of the unknown is a powerful thing and it's hard not to wonder.

My hope is that he's just had a bad patch these past few days and that it will get better.  Overall, I'm very proud of what he has accomplished.  I don't think too many folks could continue to work every day, and do the stuff he's been doing in the garden recently, while taking chemo.  Perhaps this is just his body's way of telling him to slow it down a bit.